Monday, May 23, 2011

How hopeful became hurtful

When the diagnosis of testicular cancer, even late state, was given, it came with the addendum 'If you had to pick a cancer, you picked the right kind. This is so curable'. And in the beginning of this all that was a beacon of hope - 95% cure rates over all stages.

Of course the actual cure rates varied by stage - 100% for stage 1, less as the disease progressed and a little less for nonseminoma vs seminoma - but hey, he picked the right one ... right?

And that was something to hold onto - hope for the cure. Chances were good - 95%! Even with his late stage, large metastasis and type of nonseminoma all still looked good (and still does, don't get me wrong on this part). Hey - this is what Lance Armstrong had, right?

But somehow, the words ‘That type is so curable’ became hurtful, almost insulting.

Because Kel went through the 4 cycles of chemo – BEP, the new and improved cure! And there was a ~30% chance that he wouldn’t be done after the chemo and might need surgery, but the chance of no long responding and needing more chemo before looking at surgery never came up.

And so now hearing that it is so curable is like a slap in the face, because he is not yet cured. It’s like hearing he did something wrong … because otherwise he should be done and past this already, right?

Come on Kel, it’s so curable … why aren’t you cured yet?

He and I were talking about that the other night, how for some reason that was hurtful to us both. It’s like disregarding his cancer because there is no question – he will be cured.

And his chances are still great, but they are no longer the 95%. Now it is a ‘the expected outcome is a cure’, but no more numbers. And I don’t know if he really wants me to look into chances here. I don’t know if information is knowledge, or ignorance is bliss. Sometimes I wish I was a little more ignorant on this all.

Why couldn’t it be a disease I don’t know well, because then I wouldn’t know too much and worry too much? For me, ignorance would be bliss. But Kel claims he wants to know more, so I will find out that the 3-4% overall mortality increases given his diagnosis, lack of full response, and etc.

On the upside, he is feeling a LOT better now, almost a week post Neulasta and the extreme bone pain. The pain side effect from the first cycle of the new chemo is some fatigue this week, but of course it all should start again next week, so this only kind-of-tired part will be around only for a short time.

The upcoming schedule: Kel has bloodwork on Friday (I just re-scheduled it today so that the biomarker results would be in by the next appointment and the best decision could be made for the second cycle, or not), Butch and Rachel (Kel’s dad and sister) come into town on Saturday and stay through the following weekend, the follow-up appt with the oncologist is Tuesday afternoon and we will learn when/if the second cycle starts then.

We fully expect a marked decrease in the biomarkers since he asked for them to be examined while he was still in the hospital for cycle 1 of this new stuff, and one of the two #’s already decreased, but those #s will really be what makes Kel more confident and feel better (a decrease, of course). So Tuesday 5/31 is the day!

It sux that hope became hurt when Kel didn’t follow the prescribed norm, when his response to chemo fell short of a cure, and when these few months began to drag out to more than half a year. But such is life, and you have to work with what is thrown your way, so I choose to take this curve ball and hit it out the park, make it a home run (does that metaphor even work? I soooo don’t know much about baseball).

I toggle between hurt and hope, between fear and wishing for ignorance. Yesterday’s birthday went so well that, at least for tonight, I am grabbing a hold of hope and ‘hoping’ it sticks through my dreams.

Hopeful dreams for all,


1 comment:

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